The Rare Disease Social Research Center

Research focus: Members of the Rare Disease Social Research Center (RDSRC) conduct interdisciplinary and comparative qualitative research at the intersection of sociology of health and illness, medical anthropology, medical technologies, bioethics, and disability studies. Specifically, we attend to the lived experience of people with rare and/or chronic conditions and their care givers. We further examine health care policies and practices, knowledge production, the role of different stakeholders (health professionals, patient advocacy organizations, health policy makers, etc.) and biomedical technologies in the field of chronic and/or rare diseases. We also analyze rare diseases in the context of global health. We are further interested in scrutinizing the relationship between health and life stages, health and religion, health and environment as well as health and migration.

The RDSRC organizes a seminar series on “Society and Technologies on Health and Illness” and co-organizes an online guest lecture series titled “Transition in Rare Diseases” (with Dr E-M. Knoll, Institute for Social Anthropology, Austrian Academy of Sciences). Between 2022-23 and 2023-24, the RDSRC held a seminar series on “Critical Mental Health.” In June 2026, the RDSRC will organize an international conference entitled “Social Sciences and Humanities on Health, Illness, and Medicine in Central and Eastern Europe” in Warsaw. Previously, the RDSRC organized two international workshops on rare diseases at the IFiS PAN in Warsaw (March 2022) and at the Brocher Foundation Center in Hermance, Switzerland (May 2023; co-organizer: Institute for Social Anthropology, Austrian Academy of Sciences). For a full list of RDSRC members and collaborators and for more information please view our website at: https://rdsrc.ifispan.pl/en/

Current research projects:

• 2024-2026: “Transition in Rare Diseases.” Joint Project under the Scientific Agreement between the Polish Academy of Sciences and the Austrian Academy of Sciences. Co-PIs: Malgorzata Rajtar (RDSRC/ IFiS PAN) & Eva-Maria Knoll (Institute for Social Anthropology, Austian Academy of Sciences).
• 2025-2026: “Transition experience in rare metabolic diseases.” Joint project with the Department of Pediatrics, Nutrition and Metabolic Disorders, Children’s Memorial Health Institute, Warsaw, Poland. Co-PIs: Małgorzata Rajtar (RDSRC/IFiS PAN) & Ewa Ehmke vel. Emczyńska-Seliga (Children’s Memorial Health Institute).
• “How Senior Residents in Warsaw Experience Becoming Care-Dependent: An Ethnographic and Participatory Exploration of the Present and Future of Elderly Care.” PhD project. Adrianna Biernacka-Gemel, MA (GSSR)
• “The body, the mind and the making of modern Turks. A social science study of mental health approaches in post-1923 Turkey.”  PhD project. Baris Kamyab Muhammedrezai, M.D. (GSSR)
• “Paths to Healing? Ethnography at the Intersection of Various Polish Healthcare Systems – The Case of People with Eating Disorders.” PhD project. Wiktoria Nylec, MA (GSSR)

Head of the RDSRC and member of the RDSRC with PhD or Habilitation degree:

Dr hab. Małgorzata Rajtar, prof. IFiS PAN/ Associate Professor

Faculty interested in serving as supervisor or co-supervisor to GSSR PhD students:

Małgorzata Rajtar: mrajtar@ifispan.edu.pl

I am interested in supervising students whose work intersects with any of my areas of interest.g students whose work intersects with any of my areas of interest.